Told COPD will extremely shorten life - anyone any experience?

[trainingseasonsover]

DP, 40 years old, has been diagnosed with COPD. The doctors don’t understand how it’s become so bad so quickly and have said it’s irreversible. He’s been told, if things continue as they are, he won’t live longer that 12-18 months.

Has anyone else been through a similar thing and the doctors have been wrong? Is there something that worked in particular?

I just can’t believe it.

Unfortunately COPD isn't reversible - the damage done to the lungs is permanent.

I'm sorry you seem to have been completely blindsided by the severity of your dh's lung condition. That must have been awful.

You could phone the asthma and lung UK helpline, I've dug out the number for you 03002225800. They have some brilliant nurses who might be able to answer your questions and offer advice.

My dp had it since he was 40, now 73 and it's not progressed. He was told it has improved at his last review. My friend has had it for 35 years, hers has vastly improved. There are lung rehabilitation exercises to help with it. I don't want to give you false hope, this is just my experience.

My dad had COPD that progressively worsened (as is typical of this disease as it isn't curable). His breathing got very laboured over a number of years but eventually he died of cancer.

My friend's DH also has COPD. He's had it a number of years and is now at the stage where he's housebound and can only manage a few steps as his breathing is so very bad.

I'm sorry to hear your disease is progressing so quickly OP. My two examples are by no means an indication of what will happen and other responses seem to indicate there may be chances of improvement.

Mil was diagnosed with it mid 60s and now 88 .
Tbh would take the advice of a previous poster and contact any relevant helplines etc .

My FiL had COPD and his breathing got progressively worse. He was given an asthma inhaler which did help a bit. He died from it during lockdown when he couldn't get seen by his GP and died waiting for an ambulance. I think if he could have got some medical help he might have lived longer. He smoked heavily and all his life from 14.

I am so sorry you have to go through this. These are a few very reliable websites, packed with information about the disease, tests and treatment options. I hope they can help. All the best. https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679. NIH: ''During the current COVID-19 pandemic, SARS-CoV-2 virus infection is one of the likely causes of acute COPD exacerbations'' Otherwise,in normal times, smoking seems to be blamed for COPD or chronic bronchitis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10253799/#:~:text=During%20the%20current%20COVID%2D19,considered%20an%20exacerbation%20or%20not.

COPD is an umbrella term so you really need to know which disease he has.

The two main types of COPD are emphysema and chronic bronchitis, but many individuals with COPD can have both. There is a couple more but I can't think of them, but they relate to a specific thing such as breathing in asbestos etc.

They’ve not told us the main cause, only that they don’t understand it - feels as though they’ve just sent him on his way without a plan or info on what to expect.

Hands and feet are sore/tingly with some swelling to feet - now worried it’s something heart related. Is this normal?

Contacting GP next week either way

Heart and lungs are related. People who have lung transplants tend to have heart and lungs done together rather than just lungs to maximise a good outcome.

It's been five years since I was diagnosed and not a single medic has explained it to me. I was given an inhaler and signed up for a six week pulmonary rehab course (exercise class) and that's it. Everything I've learnt is from the Internet and the main thing I've understood is keep using your thigh muscles. Treadmill and bike for 10 mins each, leg weights and some arm ones for 3 sets of 10, twice a week, will be the biggest help. Obviously stop vaping/smoking, being in dusty or mouldy/damp atmospheres or using aerosols all help.

Sorry I can't give you more useful information.

My auntie had a similar situation in that she was diagnosed at 40. She also had a condition that meant her organs weren’t correctly situated in her body as well.

She was diagnosed with COPD around 40 and told all sorts of things, including that she would need surgery on those organs.

She opted not to do anything.

She died 30 years later and she was able to do lots - Basically lived a normal life but had some oxygen treatments at home.

I very much hope the outlook for your DP is not what they are saying. 💐

@Pixiedust1234 you were diagnosed with COPD and given no advice? I know I’m going to piss people off here but having had the most ludicrous experiences with the NHS I’m really starting to wonder what some consultants are up to.

Could he ask for a second opinion - ask to be referred to specialist services or for research trials?
i am sorry his prognosis is so poor - my experience has been with older men who continued to smoke and died within a few years of diagnosis.

@EmmaEmerald - as stated, I have a daily inhaler and given a 6 week exercise course and that was it. At my diagnosis I was told "you have copd, I'm really sorry. Impact team will be in touch". The impact team gave me the inhaler and showed me how to use it. No follow up. Even the annual medication review is an online survey, no feedback from a living person. Its wonderful :/

I hope OP has access to better information once they speak to their GP. Then perhaps she can tell me 🙃

So sorry to hear that op. DF was diagnosed with COPD at age 67, but had clearly had it for years before but refused to go to the drs. He almost died when he was first diagnosed and we were given the impression he’d only have 2 years at the most. He died 11 years later. He was very ill for the last few years but didn’t always help himself - e.g did. no exercise. I hope your DH proves everyone wrong.

my cousin has had it for around 8 years I think. He was a heavy smoker but stopped as soon as he was diagnosed

My grandparent had COPD diagnosed in his 70s and lived to 83. He kept out living all the doctors prognosis. I hope the same is true for your DH. Very best wishes

OP@trainingseasonsover is your OH a smoker ? I’ve seen plenty of people with COPD working in hospice care but at his age he would be unusual as would that short a prognosis….COPD ,as the name suggests, is a chronic condition that does progress to a terminal phase but I’ve yet to see anyone that age be given a prognosis that short . Do you have any contact details for a respiratory nurse specialist as I really think you both need someone to talk you through everything in detail…often people are in shock when seen by a consultant and given bad news so you may not have received all the correct info. I would suspect there is something else in the mix that is going on and there are some other issues eg.cardiac ,has he been put on any cardiac medication, eg. diuretics ?is he breathless at rest or on minimal exertion?

@trainingseasonsover to add, if he has never smoked and has no other significant risk factors eg. Industrial exposure, pollution, frequent infections when younger, there are some (rare) genetic causes ,this patient group can develop COPD at a much younger average age then the typical COPD patient. If he smokes / vapes or is around people who do then please try to get him / them to stop asap. Sending hugs, it must have been a terrible shock for you both.

@Weatherfor
He was a smoker, not heavy but enough, stopped last year. There is also some family history of COPD which is worrying too.

I just feel like we’ve not been told what to expect, etc and, speaking practically, there’s a lot we need to consider and plan for.

He’s been regularly at the doctors with health issues over the last year, they’ve often told him to pick one symptom to resolve rather than looking at the bigger picture and joining the dots. It’s easy to find someone else to blame though.

@trainingseasonsover I really would ask them if you can about the genetics side, solely because if you have kids it may be important, particularly if he has had any other family members develop it at a young age. As I said there are some rare genetic causes, there is something in particular called Alpha-1 anti trypsin deficiency which means that you are more at risk of developing early COPD and they can do genetic testing…..the rarity means not all drs will think of it but if someone’s developed COPD under 40 I would consider it.You have to have a copy of the faulty gene from both parents to show symptoms but family members can be carriers with 1 copy. So sorry you are having to go through this but if you can ask for support from the respiratory specialist nurse , it sounds as if you really need advice and guidance. The nurse in our local trust was very helpful in supporting our COPD patients as it’s useful to have someone who can be a point of contact.there are a number of things that he can learn to help manage his symptoms ( that was my role in hospice, I was generally supporting my patients to be as active as possible over a number of years) but I know it might all be a bit much at the moment and you will be just trying to understand things.

https://www.asthmaandlung.org.uk/conditions/alpha-1-antitrypsin-deficiency

I was diagnosed with emphysema at 50 and it’s no worse now 8yrs later . Is he under a respiratory consultant , if not ask for a referral. If he smoked until recently then that is likely what caused it . I’ve never smoked or vaped .

My aunt smoked from 14-50 years old when she gave it up as her “morning cough” was getting so bad.
She was diagnosed with COPD in her 60s and used inhalers and although it did get worse in her late 80s and then she needed oxygen at home she still lived on till 92 when she died after a severe stroke.

A friend has COPD but still chain smokes roll ups , if she gets a cold she struggles to breathe and it takes ages to get better . She has lost loads of weight recently and has a terrible cough .She says she's had a scan and her lungs are fine . I don't think she's telling the truth .She won't give up the fags.

Thank you for your replies. DP has had another test and it shows his lung capacity has reduced by 10% in the six weeks since the last one. Does anyone have any experience of how it could reduce so quickly?

he didn’t even have COPD 13 months ago and now he’s at stage three.

What do we need to worry about, how short does his breath need to be before we seek medical help, etc.?

Practically, will he be able to work (desk job). Do we need to look at ground floor bedrooms and bathrooms?

I just can’t believe looking at him that he’s as poorly as the tests show. I don’t know what to expect or do to help. It just seems like this consuming elephant in the room.

My husband has COPD, diagnosed originally about 8 years ago and now stage 4. We have a team of specialist respiratory nurses in our area and they have been our most useful resource. Ask your GP do you have them in your area and request a referral. He should be under care of a respiratory consultant and be given advice about using a nebuliser etc. I hope you getsome support soon.